What Not To Say About Hidden Disabilities

Guest Author - Monica J. Foster

If you yourself are in a wheelchair, walk with a cane or on crutches, have a prosthetic, hear with a hearing aid or use an assistance animal, people know you have a disability. Yet, when you don't have these things and you experience seizures, chronic pain, a heart condition and the like, it's too easy for us to judge.

Do you have a friend, relative or coworker with an illness or disability that isn't obvious to you? Maybe they park in the accessible space, use a placard even, but you grouse at the idea wondering if they really need it. And, you may think you're doing the right thing by saying he or she "looks well" or "You look so good for being (insert condition here)." You're wrong, unfortunately.

Why do people take such offense to the seeming compliment that they look well even when they don't feel well? Ninety-six percent of illnesses are invisible to the average person. To comment on a person's outward appearance says to the person, whether we mean it to or not, that they should feel the way they look: absolutely okay and well. However, invisible or hidden, chronic illnesses that can be disabling, such as diabetes, mental illness, lupus, multiple sclerosis and fibromyalgia, can be draining and painful to the person experiencing them.

An invisible disability refers to a person who experiences extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc., that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury ... and are not always obvious at first glance. A 'visible' impairment or use of an assistive device like a wheelchair, walker, crutches, hearing aid, or cane are not required with a chronic disabling illness

In Corporate America, it is considered unprofessional to bring personal problems into the workplace, so it seems to be the norm to keep hidden disabilities, well, hidden, for fear of stigma or reprisal. But looking good and feeling good are two very different things. From the glares people with non-visible disabilities get after parking in an accessible parking space to the "You're so lucky you get to stay in bed all day" comments, the ignorance of life's obstacles with a chronic illness or disability can hurt as much as the actual physical pain.

Other exceptionally hurtful comments that should not be uttered to a person with a chronic illness or hidden disability include:

1. "I bet your just stressed out." This undermines a diagnosis given by a doctor and makes the person feel like they are exaggerating their pain.

2. "My [insert relative's or neigbhor's name here] had that, and she manages great!" No two people with a similar disease or illness are alike. They are like snowflakes. Measuring the extent of a person's disability or illness against the condition of another person is insensitive and does more to separate than include them in a common group of people.

3. "No pain, no gain!" This cliché may work with exercise, child birth and other life experiences, but it certainly does not apply when it comes to a chronic illness or disability.

4. "Oh, I bet it's just in your mind." People who are still struggling to get a diagnosis for their symptoms find this statement so frustrating. They aren't imagining their symptoms. Just because symptoms are not visible to others doesn't mean they are in the imagination.

5. "You're just want attention or pity." People with an invisible disability or chronic illness would rather be left to live their lives and are, for the most part, not attention seekers. Many people think that people with evident disabilities are helpless, broken and weak. The stigma is one that newly diagnosed people often experience shame around, and it makes it even more hurtful to hear this.

6. "Well, you're here! You must finally be back to your old self." This can be so disheartening and hurtful to hear. For those with chronic illnesses, there is no cure, and hearing a comment such as this one proves that the illness is not understood well. Becoming accustomed to an illness or disability is a personal journey, and each person's journey is their own. Chronic illness symptoms can also ebb and flow with good and bad days. That doesn't mean they are feeling good as new.

7. "I really admire your courage!" People with disabilities learn to adapt their lives around their disability just like any other life changing event. It is not a show of courage or denial to carry on like anyone else would. Human beings, for the most part, have a way of carrying on through challenges. That doesn't make them superhuman. To insinuate such is offensive.

8. "It's so wonderful how you pretend nothing's wrong." Maybe they aren't pretending. Maybe they are having a decent day without a flair or symptom that day. Or, maybe they are choosing to focus their attention on more important thigns they value in their lives than the pain and challenge of the hidden disability. It's not an act. It's about what you choose to focus on, if you can focus on something else.

The best gift that people with evident disabilities can do for people with chronic illnesses and invisible disabilities is to give them the freedom to just be people like people with evident disabilities want to be and the space to experience the various social and advocacy movements with them. People with hidden disabilities have rights, privileges, dreams and goals, too.